Anyone with Atypical TRIGEMINAL NEUROPATHY? (Bilateral)

I’ve had this condition for 14+ years. No drug or treatment has relieved the daily pain. My pain specialist told me there is no treatment/drug that has been able to treat the bilateral trigeminal neuropathy I have as the source of it lies deep within the core of my brain.
Those of you who have bilateral trigeminal neuropathy with no known origin; have you found anything at all that has effectively reduced your pain?
Sharon

Sharon, I have TN on one side of face and I have neuropathy caused by 2 treatments of GK and CK (radiation). Neuro has me on Lyrica 3/day, Trileptal, Amitriptylin. The Lyrica does help, very expensive though. I was told the Trileptal has some benefit toward neuropathy. ... not sure about that, but that's what I was told. Anyway, Lyrica is the main one I take. It does help. It does not rid me of it, but it does dull it up a lot.

Would either of you consider trying a portable ultrasound device? It works like a slow release medication; low intensity low frequency ultrasound which has a patch that you would wear on your face to sleep at night. Once you turn it on it works in 30 minute cycles. It is FDA approved though not covered by insurance. There are studies done on the effectiveness it has had on patients with TN. I do not have TN; I'm a physician assistant working in general surgery and prevention. I have a patient who became addicted to narcotics while trying to treat chronic pain; he tried this ultrasound machine and it worked for him, though it may not for everyone. If you'd like more information I'd be happy to give it to you.

Brian

Sharon, Ive had TN for 14 yrs. I've tried a host of meds but currently I'm on Lyrica. It works exceptionally well, however it does have side effects (weight gain and swollen hands). I also have decompression brain surgery. it helped some but still on Lyrica

can you send me more info

Brian said:

Would either of you consider trying a portable ultrasound device? It works like a slow release medication; low intensity low frequency ultrasound which has a patch that you would wear on your face to sleep at night. Once you turn it on it works in 30 minute cycles. It is FDA approved though not covered by insurance. There are studies done on the effectiveness it has had on patients with TN. I do not have TN; I'm a physician assistant working in general surgery and prevention. I have a patient who became addicted to narcotics while trying to treat chronic pain; he tried this ultrasound machine and it worked for him, though it may not for everyone. If you'd like more information I'd be happy to give it to you.

Brian

Lyrica is effective initially with me but after 2 yrs lost it's effect I'm looking into medical marijuana

I've tried a friends reg marijuana and surprisingly

takes the pain away 1-2 hrs

stew

hello,

I have atypical (constant tingling) TN

I have tried , neurontin, trilepital, amitrypteline - no avail

i have it now since 2008

it doesnt effect me sleeping but is very dehabilitating - eg meetings etc when i am not speaking i feel awful

Brian, how much will it cost? I'm on medicare Advantage but you say its not covered by ins.

Brian said:

Would either of you consider trying a portable ultrasound device? It works like a slow release medication; low intensity low frequency ultrasound which has a patch that you would wear on your face to sleep at night. Once you turn it on it works in 30 minute cycles. It is FDA approved though not covered by insurance. There are studies done on the effectiveness it has had on patients with TN. I do not have TN; I'm a physician assistant working in general surgery and prevention. I have a patient who became addicted to narcotics while trying to treat chronic pain; he tried this ultrasound machine and it worked for him, though it may not for everyone. If you'd like more information I'd be happy to give it to you.

Brian



Jimmy Works said:

Brian, how much will it cost? I'm on medicare Advantage but you say its not covered by ins.

Brian said:

Would either of you consider trying a portable ultrasound device? It works like a slow release medication; low intensity low frequency ultrasound which has a patch that you would wear on your face to sleep at night. Once you turn it on it works in 30 minute cycles. It is FDA approved though not covered by insurance. There are studies done on the effectiveness it has had on patients with TN. I do not have TN; I'm a physician assistant working in general surgery and prevention. I have a patient who became addicted to narcotics while trying to treat chronic pain; he tried this ultrasound machine and it worked for him, though it may not for everyone. If you'd like more information I'd be happy to give it to you.

Brian

Jimmy,

I do not have a lot of experience with patients trying to get it covered. But I would definitely try. It should be covered: it has no side effects and it treats pain!

You'd have to get a script from your physician or PA or whomever you work with. The device is called Pain-shield.

The prescription would have to be faxed to the medical device company which supplies the ultrasound:

Multigon Industries, Inc

525 Executive Boulevard

Elmsford, NY 10523

914.376.5200 (Ph)

914.376.6111 (F)

www.multigon.com

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My email address is ■■■■■■■■■■■■■■■■■■■■■■■■■■

Brian :

would you equally recommend when sleep time is the only time when the pain is not active (and maybe the first 30 mins after waking)

thanks

Declan

Brian said:

Jimmy,

I do not have a lot of experience with patients trying to get it covered. But I would definitely try. It should be covered: it has no side effects and it treats pain!

You'd have to get a script from your physician or PA or whomever you work with. The device is called Pain-shield.

The prescription would have to be faxed to the medical device company which supplies the ultrasound:

Multigon Industries, Inc

525 Executive Boulevard

Elmsford, NY 10523

914.376.5200 (Ph)

914.376.6111 (F)

www.multigon.com

■■■■■■■■■■■■■■■■■■■■

DJB, I'd like to know the answer to that. I too have no pain at night. When I lay down at night any pain, tingling, stinging, etc just melts away. When I awake there is nothing for several minutes, then it starts back.

djb said:

Brian :

would you equally recommend when sleep time is the only time when the pain is not active (and maybe the first 30 mins after waking)

thanks

Declan

Brian said:

Jimmy,

I do not have a lot of experience with patients trying to get it covered. But I would definitely try. It should be covered: it has no side effects and it treats pain!

You'd have to get a script from your physician or PA or whomever you work with. The device is called Pain-shield.

The prescription would have to be faxed to the medical device company which supplies the ultrasound:

Multigon Industries, Inc

525 Executive Boulevard

Elmsford, NY 10523

914.376.5200 (Ph)

914.376.6111 (F)

www.multigon.com

■■■■■■■■■■■■■■■■■■■■

OK, I have a question…I have bilateral TN, both types, 1&2. Is there a difference between neuralgia & neuropathy? If so what are they?

Trigeminal neuropathies (TNs) are disorders characterized and manifesting as skin and mucosal numbness in the region innervated by the trigeminal nerve. Facial numbness indicates trigeminal sensory alteration affecting the trigeminal system. There's a fact sheet on the NIH PubMed that describes it as a numbing disorder. From what I've read (because I was misdiagnosed with this disorder), there's not a very long life expectancy.

If you're experiencing horrible sharp, stabbing pain in the facial nerves (chin, cheeks, in front of the ears, around the eyes, in the forehead), it may be synkinesis. I have it bilaterally and while lyrica and opioid help, I've found the only thing that helps is holding a tube of lidocaine/prilocaine cream and slathering it on the affected area, waiting for it to soak in and putting on more. When it's really bad, and it usually is, I put it on my entire face until it's numb and add more to the areas where the nerve pain is the worst. It doesn't get rid of all the pain but it does give me a break from the worst of it and it seems to calm the nerves down so when the cream wears off the nerves don't hurt quite so much.

I just came off an attack that lasted ten days and the pain isn't too bad right now but a nerve in the left side of my chin is stabbing and I'm putting cream on it now to try to calm it down. It seems like it other nerves start "firing" if I try to ignore the little ones and if too many get involved, it spreads until it's unbearable.

The other thing that has helped is botox injections but they can't put too much in my face or the whole thing sags and it only works for a month or so then I have to wait for weeks before the insurance company will pay for more. The pain seems worse when the botox wears off and I'm beginning to wonder if it could be making the condition worse. It has definitely helped short term but I still rely heavily on the lidocaine/prilocaine cream. There are nights when I sleep with it on my chest and when the stabbing nerve pain breaks through or happens in another area I put more on.

I have migraines from head injuries and when I've had both migraines and synkenisis my neurologist has given me occipital blocks with lidocaine injections and she's injected the facial nerves. What a difference! Everything is numb and life feels so much better. Usually the facial nerves are calmer when the injections wear off.

It seems that anything that calms the nerves even for a short time brings down the level of nerve activity when it wears off. I hope any of this helps you find some relief.

I had TN pretty bad on one side for 3 yrs and I took no drugs. I took Alcohol moderately when it was bad. Acupuncture made it worse. I have been in remission for 7 mths now. (3yrs + 7 mths) The Alcohol relaxes the nerves. Of course the more U drink the longer U get relief. If U are not driving anyway it is not a problem. And don't listen to the people who say Alcohol is bad for U because all these drugs that TN people take are far worse and have awful side effects. Good luck.

I don’t know if it is a possibility, but have you looked into a peripheral nerve stimulator? I had on implanted for ATN pain that was not resolved by MVD and it works very well on my pain. I am not sure if it would help with trigeminal neuropathy, but wanted to put it out there for you.
I hope you find some relief soon.
Best of luck,
Christine

Count yourself fortunate. you are in remission. That's rare to happen on its own.

Stevo53 said:

I had TN pretty bad on one side for 3 yrs and I took no drugs. I took Alcohol moderately when it was bad. Acupuncture made it worse. I have been in remission for 7 mths now. (3yrs + 7 mths) The Alcohol relaxes the nerves. Of course the more U drink the longer U get relief. If U are not driving anyway it is not a problem. And don't listen to the people who say Alcohol is bad for U because all these drugs that TN people take are far worse and have awful side effects. Good luck.

next time I talk to my neuro I'm going ask about that.

Christine said:

I don't know if it is a possibility, but have you looked into a peripheral nerve stimulator? I had on implanted for ATN pain that was not resolved by MVD and it works very well on my pain. I am not sure if it would help with trigeminal neuropathy, but wanted to put it out there for you.
I hope you find some relief soon.
Best of luck,
Christine

I don't think I am in Remission. I think I am cured. All the remissions I had before I had to be very careful not to trigger it again, like scratching my temple or rubbing my eye. This time no matter what I scratch, I can't trigger the pain. Here's hoping it lasts. I know of others who have had it stop. The brain has to be tricked into not remembering the pain. I think the alcohol relaxed the brain. Fingers crossed.

Jimmy Works said:

Count yourself fortunate. you are in remission. That's rare to happen on its own.

Stevo53 said:

I had TN pretty bad on one side for 3 yrs and I took no drugs. I took Alcohol moderately when it was bad. Acupuncture made it worse. I have been in remission for 7 mths now. (3yrs + 7 mths) The Alcohol relaxes the nerves. Of course the more U drink the longer U get relief. If U are not driving anyway it is not a problem. And don't listen to the people who say Alcohol is bad for U because all these drugs that TN people take are far worse and have awful side effects. Good luck.